God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.

(2 Corinthians 1:3b-4, NLT)

Thursday, May 23, 2013

Well, Faith had all of her tests and the results are in. First, the good news: her upper GI/small bowel follow-through didn't show any anatomical issues, no bowel dilation or anything else! Also, the test went faster than it ever has before- we started at about 8:45 and were finished by 1:30! And "finished" had a totally new meaning this time too, because we actually were able to see the barium in her colon, a point that I don't think we have EVER gotten to before. Faith didn't have any issues clearing the barium out, either, which had been a worry of mine since in the past she has gotten almost completely stopped up after one of these tests.

Faith's stomach full of barium, with no reflux into her esophagus!

Lots of barium making its way through her twisty guts

A perfect patient, with white lips from her tasty barium "milkshake"

Now, the bad news: Faith's VUR is not resolved, and has not improved at all over the past year, in fact they were able to see better on one side so technically the grade was increased on that side after this test. She has grade 2 reflux on one side and grade 3 on the other. We had talked to her before the test and let her know that surgery was a possibility, so she wasn't too upset, although I'm not positive she understands what exactly it entails... We've talked more about it since we found out it was going to happen, and are doing our best to prepare her. This will be the first surgery that she will be old enough to really understand what is going on, so we really want to help her know what to expect. The past few times she's had any procedures, we've gone out of our way to clearly explain what was going to happen and what she needed to do, and the medical staff has said each time that they wished all of their patients were like her, so I think that approach is working well. I think it's also given her more ownership of her body, her history, and her health, which seems to be coming at the perfect time, since other kids her age have had reasons recently to ask about her scars and why she is going to have surgery.
Her surgery will be on June 10, and will be at the "other" hospital for children in Denver. As silly as it sounds, I think I am more nervous about her having surgery at a different hospital with a doctor who hardly knows her than I am about her actually having surgery! This will be her 11th trip to the OR (not all of those were major surgeries, but all involved general anesthesia), but the last 4 or 5 of those were with Dr. Puder in Boston, and the ones before those were all with the same team of surgeons during her NICU stay...
Every hospital does things differently, so this will be a first-time experience all over again for all of us, we won't be feeling like "veteran" surgery parents this time around. Pair that with the fact that the doctor doing the surgery has met her all of twice for a grand total of about 10-15 minutes and seems to have no understanding of her complicated history... and then he told us we'd "have to remind him" that Faith is allergic to PDS sutures because those are what he usually uses... Needless to say I am feeling pretty nervous about trusting her to this doctor. It's kind of hard to explain I think, or hard for people who haven't been in our shoes to understand why it makes a difference, but the surgeons who took care of her in the NICU did every surgery she had from the very first one when she was just a few hours old to the last one the week before she got out. And Dr. Puder so obviously cares deeply about his special patients that it was incredibly easy to hand her over to him for surgery... This guy makes me feel like I need to write her list of allergies in Sharpie across her belly, since apparently they won't be listed on a hospital bracelet or else they just won't check the bracelet...
I've gotten a bit of a lesson from God through all if this, too. Last year when Faith was diagnosed with the VUR and they said they would put her on antibiotics for a year and watch her, I felt very strongly that the antibiotics were a bad idea and we should probably just do the surgery, but I brushed that feeling aside because I didn't want her to have to go through another surgery. Then, when the antibiotics did what I thought they would and totally messed up her gut flora, I thought again that we should just do the surgery and get it over with, but again I brushed it off... Now I am kicking myself for not listening to what I apparently knew all along was the solution, and praying that Faith won't have any permanent damage as a result of my stubbornness. Dave and I are afraid that she's been having kidney infections all this time, looking back now and knowing that the VUR was not resolved... A lot of her "mystery" symptoms would fit into that possibility (the random unexplained throwing up, the sudden onset of bedwetting when she NEVER wet the bed before, her complaints of pain in areas that didn't make sense for gut stuff...).

Faith "driving" the tractor on her field trip to the dairy farm today

At this point, the surgery is pretty much guaranteed to happen, because as far as we know they won't be doing a pre-op VCUG. So, rather than asking for prayers for healing, we are asking for people to pray that the surgery and recovery will go smoothly- as well as or better than they expect it to go, and that she won't have any lasting damage or negative effects from the VUR or the surgery. She hasn't had many things go as easily or smoothly as expected in the past, but we firmly believe in the power of prayer, and would love prayers from anyone who might read this!

No comments:

Total site visits:

Welcome to Faith's Place!

This is Faith's Place. Faith is a gorgeous little girl who had a long recovery from being born with a serious birth defect called gastroschisis (she had a hole in her abdominal wall and her intestines were on the outside at birth). Her intestines suffered some damage, most likely from being exposed to the amniotic fluid before she was born, and didn't work like they should; she was diagnosed with functional short bowel syndrome at about 4 months old.

Faith was born November 13, 2008, and spent her first 127 days in the NICU at Denver Children's Hospital. Because her intestines were not functioning, she was not able to receive nutrition in the normal way through her stomach and intestines, so she was on IV nutrition (TPN and Intralipids) during this time.

As a result of being on TPN for such a long time, she suffered liver damage to the extent that her doctors in Denver believed she should be evaluated and listed for a small bowel transplant. However, with a survival rate of only 50% at 5 years post-transplant, we weren't ready to take that step. Instead, we did considerable research on our own, and found out about an experimental treatment for babies with TPN-associated liver disease (TPNALD) called Omegaven, which was run by Children's Hospital Boston.

On March 24, 2009, Faith was admitted to Children's Hospital Boston, and became Omegaven baby #115. After only 30 days on Omegaven, Faith's direct bilirubin level (an indicator of liver health) had already dropped from 6.7 to 2.0, including an expected spike to 8.0 about 2 weeks after starting Omegaven treatment. Less than 6 months after starting Omegaven, she was fed 100% through her stomach (enterally), getting large amounts periodically during the day (bolus) and continuous feeds over night, and her liver function test results were *perfect*.

Her central line (a permanent IV line in her leg through which she received her TPN) was removed on September 16, 2009, after almost exactly 10 months to the day of having a central line, without ever having a line infection!

She learned to eat and drink by mouth, and by 18 months old, she was 100% orally fed! Her g-tube was removed in December of 2010, making her officially tube-free for the first time in her life. She is now enjoying life as a "normal" preschooler, with very little medical follow-up, and other than her scars, no outward signs of any of her journey to this point.

If you are new to Faith's blog, click on "2008" in the archive list, scroll to the bottom of the page, and work your way up to read her story from the beginning!

Search Faith's Place

Statistics to consider...

-The survival rate of children with direct bilirubin levels greater than 3.0 for 3+ months is only 22%. (Faith's direct bilirubin levels were greater than 3.0 for about 4 months.)-The survival rate of children on TPN for longer than 1 year is only 10%.-The survival rate of children who receive a small bowel transplant at 5 years post-transplant is only 50%.-The survival rate of children, with a history of TPN-associated liver disease and direct bilirubin levels of at least 2.0, on TPN, with Omegaven replacing Intralipids, is 98%!!!!!!

Education is the key to saving the lives of children with TPN-associated liver disease. The sooner these children receive Omegaven, the better their chances are of a "full" recovery (any damage that is done stays done, Omegaven does not reverse scarring in the liver).Healthcare professionals who know about Omegaven and neglect to tell their patients it is an option, in my opinion, are failing to uphold their responsibility to do whatever it takes for their patients' health and well-being.If your child is suffering from TPN-associated liver disease and you have found out about Omegaven and its benefits on your own, and your doctors are giving you the run-around when you bring it up to them, it's time to change doctors!! (believe me, I've been there) Omegaven WORKS, as long as it is not started too late!